Snapshots of Dementia: If You See Something, Say Something

Posted by Marti on April 1, 2023 in Dementia | 2 comments

He’s quirky.” 

Anyone who’s known Tom through the years will agree that I wasn’t wrong when I described him this way to a group not long after we had come to the final church he served as minister of music. He’s a musician; I’m a writer—we pretty much understood that quirkiness was part of the package when we married each other. 

But now, I wonder just where his quirkiness stopped and the dementia behaviors began. And I don’t suppose I’ll ever know.  

I missed many of the early signs that Tom was living with dementia—partly because his neurologist and others kept telling me he was fine. But because I didn’t know about the behavioral issues dementia can cause, I am writing about them now so perhaps someone else won’t have to wait as long for a diagnosis as we did.  

Not everyone LWD exhibits these same behaviors, and not everyone LWD has as many behavioral issues as those with a variant that affects the frontal lobe. But in addition to those I noted last week, here are some more of the atypical behaviors we saw in Tom even before he received his dementia diagnosis: 

— IMPULSIVE/RECKLESS ACTIONS: I have written about how he was blackmailed via social media and later gave away thousands of dollars to online scammers. Since he was always frugal, this was out of character financially as well as morally. I am still appalled at the way scammers prey on the vulnerable, but I wish I had recognized just how vulnerable he was much sooner. 

— LACK OF MOTIVATION: I also wrote not long ago about how Tom stopped paying attention to lawn care. This same lack of motivation, in large measure, resulted in him no longer playing his trumpet (formerly a top priority for him). After he hurt his lip in a challenging concert in 2016, he received a detailed plan to help him heal and rebuild his muscle strength, but he never followed through. He still tells people he’s a professional musician; the sad truth is that he hasn’t practiced consistently since he hurt his lip nearly seven years ago, more than three years before his diagnosis. 

— ODD PERSONAL HABITS: One day, I found him laying a towel down over the bathmat as he prepared to take a shower. When I asked about it, he said he “had never liked to get the bathmat wet.” It took a while for me to realize this was a dementia behavior, not a longtime preference that I had somehow missed. I remember watching the final funeral he officiated nearly five years ago and noticing how he constantly licked his lips as he spoke. Today, I see (and hear) that behavior whenever he’s not focused on something else, such as when we ride in the car.  

— INABILITY TO PLAN AND ORGANIZE: I was heartbroken when Tom lost his job as a music minister, but when I think back, I’m amazed he kept it as long as he did. I am sure one reason he could was the wonderful volunteer who kept him organized and on track, but even with her help, his planning became more and more erratic. It takes a lot of organizational skill to set up a worship service, and much more to plan and direct a Christmas musical with multiple numbers, soloists, lights, and sound. For at least his final two years on the job, he let some areas of planning go until it was almost too late. Today, even familiar tasks that have more than one step are challenging, often impossible, for him. 

—MOOD SWINGS: These days, I say Tom’s emotions are “all or nothing.” I have found him crying over something that happens in a movie or television show and showing no emotion when (for example) he saw our youngest grandson for the first time via video chat. Back before he was diagnosed, he showed increasing apathy toward family events, as I mentioned last time. But he also got angry much more easily than he ever had and even blew up at work more than once, as I found out later—very out of character for him. Instead of taking his mood swings as a sign of discontent or even marital problems, I now realize they were part of the changes happening inside his brain. 

And that’s the source of all these odd behaviors: brain change. On this side of Tom’s diagnosis with a rare frontal variant of Alzheimer’s disease that mimics frontotemporal degeneration, behavioral variant, I tell people what I have read from experts: If you see something, say something.  

In other words—if you think something is wrong, talk about it. See if the person can explain their behavior. If they ignore you or become angry, consider that another red flag. Ask other family members if they have noticed changes.

In our case, I suspected problems before our children did, but none of them lived at home at the time. Later, our oldest daughter was the one who urged me to press on past that first neurologist because, after trying to work on a project with her dad, she saw what I saw. And she knew that his behavior had gone from quirky to concerning. 

If you see something, say something. If you think something is wrong, talk about it. I learned, often the hard way, that the truth does set free—no matter how uncomfortable that truth may be. 

If someone you know is LWD, did they exhibit odd behaviors early on? Were any of these similar to the ones I’ve described? How has their behavior changed with disease progression? Feel free to share your thoughts in the comments below or on social media. Our story matters—and so does yours.